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Finally! Some good news about my daughter.

Better lose some weight and get new running shoes.That little princess is going to kick your butt,old man.I hope.....
 
Better lose some weight and get new running shoes.That little princess is going to kick your butt,old man.I hope.....
:laugh
Lost some weight, better get the shoes. She also had a small seizure yesterday, but it wasn't a Gran Mal.The Neuro upped her new seizure meds, I hope that is the last we see of that.
 
Needless to say, it wasn't the last one.
:bluduh

We have been busy lately. Rachael is on a new med and one of the old ones. She had a seizure on Thanksgiving day, so I stayed home with her so my wife could go hang with the family. She seems to be right on the cusp with this med combo, which kind of has us walking on eggshells.

We have been in contact with Realm of Caring, they make a Hemp oil which seems to reduce seizures in 85% of the people it was given to. It has little to no THC, the High content Cannibinoids are what works on the seizures. However, it was only recently reclassified as a supplement, and they can't ship it and it is in a gray area for transporting over state lines as well. You could drink gallons of it all day and not feel anything like a buzz. It may be up to a year before they can get anything changed, and the Police are prosecuting parents who go and get it and bring it home to their children for Child Endangerment. It has just happened to a lady in MN, and it becomes legal there January 1st. In essence, the state is saying the child having seizures is fine, a Mother trying to stop them is endangering the child.

I feel the world is slowly going insane.
:bluduh
 
Another hurdle...hope reality and science catches up with old school fears. Dang sure doesn't make sense at times.

Wishing you the best with Rachael.
 
All the best for Rachael and your family Roy.

Steve gets a pass on his getting things backwards, he's still lightheaded from sniffing gasoline fumes while transferring fuel between bikes.
 
Thanks all. On the plus side, I have my 30 years in as of November 11th, and aToy hauler and retirement could be in the works in 2 years, once my boy is out of College. We figure if we have to care for our daughter well into the forseeable future, it's going to be someplace pretty. We also hope to hit more rallies. Tryin' to make lemonade here!
:dance
 
Best to you and your family, Roy. Continued prayers for Rachael.

Hope to see you when our Toy Haulers cross paths. Or sooner would be better.
 
We could all learn so much about your positivity!

Thank you for being you and sharing your heart.

Voni:groovy
 
So many of us take our healthy children for granted. Your journey with your Daughter is a test....and one you and your family are doing the best you can. Hang in there sir!
 
Best to you and your family, Roy. Continued prayers for Rachael.

Hope to see you when our Toy Haulers cross paths. Or sooner would be better.
Thank you very much and yes to that last part.
I am working on my wife for the BMWMOA National this year. Are you going to go?

We could all learn so much about your positivity!

Thank you for being you and sharing your heart.

Voni:groovy
Thank you Voni, I can't help that it's on my sleeve. This is why I do not play poker.:lol
::heart
P.S I saw you at St Paul, but you were very busy, so I didn't interrupt.

So many of us take our healthy children for granted. Your journey with your Daughter is a test....and one you and your family are doing the best you can. Hang in there sir!
Dang, I feel like I didn't study for this test, and I am the only one who showed up naked. :lol
Thank you, everybody have a great day.
:wave
 
Billings? Unfortunately no. But hopefully next year in the East Zone. ;)

Hmm. I will be in Hampton, TN in Spring, but that is as close as I will get to the East Coast this year.
Tentatively in for next year, and I am not sure if I will make Billings either.
 
Peoria in January is nice,you should come down.

It is, I did, and you was there!
:wave

That was a hoot.

Things will be tough this summer, My girl was skating on the edge of seizures, every other day or so, and now it appears to be weekly. We have upped Meds and supplements since her last seizure on Saturday and are watching and waiting. As this may go on for a while, and most all of my energy is needed at home right now, I won't know if I will make any rallies or get togethers until shortly before they happen. I would be a liar if I didn't say I getting a bit worn out after 12+ years, these last ones being more challenging with the seizures. Probably still not going to stop trying to wring some happiness out of all of this before I pass, but dang it takes some work some times.

Meh, whattya gonna do? Have a great weekend everybody.
We might go to the RV show, perhaps it put some wind under our wings.
:lol
 
I would be a liar if I didn't say I getting a bit worn out after 12+ years, these last ones being more challenging with the seizures. Probably still not going to stop trying to wring some happiness out of all of this before I pass, but dang it takes some work some times.

I would like to encourage you to keep up the good fight. Yes it is hard work. But you are improving the quality of life for someone else and in so doing that is the ultimate sacrifice parents are tasked with. Parents with special kids are tasked quite a bit harder than most but they usually enjoy better benefits also from those special kids. At least that was our case.

Our son Chad was born with Spina Bifida. Three surgeries the next day, 16 major ones overall, 40 extended stays in hospitals for one thing or another. Wheelchair bound most his life, no bladder or bowel control, couldn't speak much, and on and on.

Never met a kid with so much love and joy for life. Taught us more than we could have ever taught him. He improved the quality of our life immeasurably. He was a lot of work over his short 16 years. Woke up one morning to find him in a coma. Long story short 30 days later he left this world for the next and we were without him. Losing him was worse than caring for him. Miss him every day. Glad he is finally healed but would do it all over again in a heart beat. A thousand people showed up at his celebration service because he had touched their life in a special way. I gave his eulogy and spoke of all he taught us over the years and how God used him to touch us and others. I pray your child will have this same impact on you and those around you. That can make it all worth while.
 
I would like to encourage you to keep up the good fight. Yes it is hard work. But you are improving the quality of life for someone else and in so doing that is the ultimate sacrifice parents are tasked with. Parents with special kids are tasked quite a bit harder than most but they usually enjoy better benefits also from those special kids. At least that was our case.

Our son Chad was born with Spina Bifida. Three surgeries the next day, 16 major ones overall, 40 extended stays in hospitals for one thing or another. Wheelchair bound most his life, no bladder or bowel control, couldn't speak much, and on and on.

Never met a kid with so much love and joy for life. Taught us more than we could have ever taught him. He improved the quality of our life immeasurably. He was a lot of work over his short 16 years. Woke up one morning to find him in a coma. Long story short 30 days later he left this world for the next and we were without him. Losing him was worse than caring for him. Miss him every day. Glad he is finally healed but would do it all over again in a heart beat. A thousand people showed up at his celebration service because he had touched their life in a special way. I gave his eulogy and spoke of all he taught us over the years and how God used him to touch us and others. I pray your child will have this same impact on you and those around you. That can make it all worth while.

She has already, but Thank you.
:wave
 
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